Wednesday, September 19, 2012

23 Months

Scarlett is 23 months old!  Her weight is up a little to 23 pounds, 4 ounces, which is great (between the 10-25th percentile for her age)! She is almost 30 inches tall, which is less than the 5th percentile...she may never be a basketball player or a supermodel, but I'm okay with that.  We moved her up to a "big girl" car seat (still rear facing!) last year, but she would have JUST outgrown the tiny infant carrier we used in her first year.  We think she may be getting some molars, as the drool factor has increased exponentially lately - 2 or 3 shirts a day minimum, with a bib all day at school.  I just bought her the first size 5 shoes (sparkly pink and on clearance - couldn't pass them up!) and they still slide off; I am quickly realizing that the size 2T clothes I bought at the end of the season last year in anticipation for this winter are going to be too big.  Still, no one is disappointed with her growth, especially in light of the issues we have had over the summer.

This girl is on the move.  She NEVER sits still anymore unless strapped down.  She has finally decided that if she wants something, she will get it, no matter what.  She has a broad repertoire of moves - scooting, turning, twisting, kicking, rolling - that get her going.  This week, she made her first forward motion with crawling!  She goes just a few inches, but both legs get pulled up.  She is learning a few position transitions - laying to sitting, sitting to kneeling, even to standing if we help a little.  We can no longer take our eyes off of her when she is on any raised surface (as my mom learned when she flew out of her high chair the other day - no harm done!)  We are working on teaching her to sit from standing, since her only way to get down is cry for help, or fall straight back.  I'm pretty sure her neurosurgeon (and everyone here) would prefer she not smack her head on the ground.

Last week, she finally figured out how to get around in her gait trainer.  She will roll around the living room to check out her play table, whoever is at the couch and look out the back door.  She found the dog's raised water bowl the other night, and had so much fun discovering it on her own and splashing away that I just ignored the dog slobber and let her go for it (with a good bath soon after). I will probably regret ever saying it, but it is wonderful to see her beginning to enjoy some independence, discovering her surroundings on her own, and getting into normal toddler trouble.

She is also noisy!!  She is constantly babbling, with many more consonant sounds, resembling more words.  She does not say many words, but she has learned the sign for "cheerios" and consistently waves bye-bye.  Every few days she seems to be picking up something new. 

Her eating has improved, too.  She still can't swallow much liquid, and spits out much of what she chooses to eat, but she is learning to like many more things thanks to her snacks at school.  She has been enjoying yogurt, cheese, raisins, black beans, and bread.  She still prefers finger foods like cheerios, but her new favorite is fig newton bars.  She starts bouncing up and down when we take the package out of the cabinet, devours them, leaving only a sticky, gummy crumb trail in her path.  We are still happily blending her remaining necessary calories in our VitaMix blender to be fed through her g-tube - still the best decision we ever made.

The next month will be exciting, yet difficult as we plan her birthday and await the next MRI on October 30.  Chris and I are struggling with this unknown MRI spot.  My mind flashes often to what I have read, the kids whose stories I have followed who have died, the effects of radiation on babies, the size of the first tumor, and I am overwhelmed.  We will be on pins and needles until we get this figured out; there's just no way to ignore it.  I have thought about calling to say no waiting, scan her now; considered getting another option; debated about forcing the issue.  But we have trusted these doctors with her life thus far; I have always felt like they are doing the absolute best for her that they can.  If they feel like waiting is best, I have to believe that, and not let my nervous anxiety interfere.  You can bet, though, that if Scarlett even blinks a little strangely, I will have her in their offices for a new MRI.  I did not claw my way through the last 21 months to be defeated now.

Thursday, September 13, 2012

Trying to Stay Calm

I had been waiting to write a blog update for a few days as we waited for MRI results.  Unfortunately, we did not get the best news, so I just have to get it out.

There is a spot on Scarlett's MRI.  They don't know what it is.  It is most likely a blood vessel that looks a little strange; as the NP scrolled through the slides from the MRI, there was evidence of a blood vessel leading right up to the spot, so it could just be part of that vessel.  Lucile Packard Children's Hospital (Stanford's children's hospital, where Scarlett has had all her oncology treatment) brain tumor board has reveiwed it, and the gut feeling is that it's a blood vessel.

But maybe it's not.

It could be the start of  a tumor.  It's too small to do much about at this stage.  Scarlett's neurosurgeon at the other hospital is being told (the NP wanted to warn him in case he read it here first...)  We will wait 6-8 weeks and get a new scan, which will hopefully help give a concrete answer.  If it is a vessel, it will be the same or invisible.  If it is a tumor, it will be pretty unmistakeable by that point.  Until then, we just have to wait.

Because she knows us very well, Scarlett's NP knew we needed to know what the plan would be if it is a new growth.  At this point, a new or recurrent tumor in the location we saw today would be operable if it were larger.  Once it was removed and biopsied, because Scarlett had such intense chemo already, the next step would be focal cyberknife radiation.

It is so much to take in, and even harder because we don't really know if there is anything to worry about.  My heart dropped and my eyes filled with tears as soon as I heard the NP's voice change to the "something to tell you" voice.  I know enough about the common progression of these tumors to know that any hint of a recurrence is bad news.  Very few children survive the first tumor, and even fewer make it through a second.

I'm not sure how to go 8 weeks patiently.  We are busy enough to bury ourselves in work, school, therapy and blood drive prep (Oct. 20!!) but there is no way to erase this from my mind.  I deelpy hope this is another bump in our road that will pass uneventfully.

It's been a rocky few weeks in general.  We have had to make some big decisions that are exhausting to deal with.  First, we had to leave her current audiologist.  We have dealt with months of problems, capped off by a very upsetting cancellation of a sedated test after we were not told the time had changed.  We will move her services to the other hospital, which is closer to her school.

We are also struggling with what to do about our health insurance.  We have had insurance through Chris' job at Starbucks for the last year, in addition to Scarlett's state-provided coverage.  It is decent coverage, reasonable premiums and only requires 21 hours per week of work.  It would seem like he could stay there, but we are really struggling with the time.  His week is back-to-back school and appointments, followed by three days of mind-numbing, on-your-feet work.  He needs, and deserves, a break.  We had hoped that my new job would have reasonable benefits to allow Chris to quit so he could take on Scarlett's care as the full time job it is.  Sadly, my district offers only painfully high-cost health coverage - over $2000 per month to keep Scarlett's doctors.  We have investigated all the alternatives we can think of; we were denied for independent coverage due to Scarlett's preexisting conditions; we may have options through our university alumni association eventually, but they said we would need to exhaust Chris' COBRA benefits first in order to qualify with her history.  I am not sure how we will proceed yet, but I hate seeing him exhausted week after week with no time off.  Since we have been through so much over the last two years, we really value the time we have together as a family, even if it is just to be home together, and a change in Scarlett's scans makes that even more critical.

There is a lot to consider in the coming weeks.  On the plus side, Scarlett is making amazing progress at school, which I will share more about in the next few days.  Seeing that helps to drive our efforts, and reinforces our confidence that this crazy schedule is worth it.

We are focusing on getting Scarlett's birthday party/blood drive ready.  We are still looking for raffle items, which will be used to help raise money for the Pediatric Brain Tumor Foundation.  If you have something you would like to contribute, please let me know at scarlettgrace2010[at]gmail[dot]com.